1. Analyses of extended set questions using the U.S. National Health Interview Survey Mitchell Loeb / Jennifer Madans (with Julie Weeks, Laurie Pratt & Nazik Elgaddal) National Center for Health Statistics/ Washington Group on Disability Statistics

2. The NHIS is a cross-sectional household survey of the civilian, non-institutionalized population of the United States, conducted annually by NCHS since 1957. Data are collected in person from a sample based on a multistage probability design. Annually, the sample comprises approximately 35,000 households containing about 87,500 persons per year National Health Interview Survey

4. WG short set of questions: Because of a Health problem: 1)Do you have difficulty seeing even if wearing glasses? 2)Do you have difficulty hearing even if using a hearing aid? 3)Do you have difficulty walking or climbing stairs? 4)Do you have difficulty remembering or concentrating? 5)Do you have difficulty with (self-care such as) washing all over or dressing? 6)Using your usual (customary) language, do you have difficulty communicating (for example understanding or being understood by others)? Response categories: No - no difficulty; Yes - some difficulty; Yes - a lot of difficulty; Cannot do at all

5. Rational for Extended Set Questions: 1)To include additional domains that were not included in the Short Set (upper body functioning, affect, pain, and fatigue) 2)To include more information per domain (for example, use of assistive devices/aids, and functioning with and without assistance) 3)To develop a single measure, per domain, for un-accommodated functioning 4)To use the additional information per domain to develop a continuum of functioning that would supplement the Short Set

6. Vision

7. Do you have difficulty seeing, even when wearing glasses? (SS) * Do you wear glasses to see far away? Do you have difficulty clearly seeing someone’s face across a room [even when wearing these glasses]? Do you wear glasses for reading or to see up close? Do you have difficulty clearly seeing the picture on a coin [even when wearing these glasses]? 2010/11* NHIS Questions:

8. Do you have difficulty seeing, even when wearing glasses? (NHIS 2011) FrequencyPercent Valid Percent No difficulty 1445786.588.1 Some difficulty 171810.310.5 A lot of difficulty 2091.3 Cannot do 320.2 Subtotal 1641698.3100.0 Refused/NA/DK 3211.9 Total 16707100.0

9. Hearing

10. Do you have difficulty hearing, even when using a hearing aid? (SS) Do you use a hearing aid? How often do you use your hearing aid(s)? Do you have difficulty hearing what is said in a conversation with one other person in a quiet room [even when wearing your hearing aid(s)]? Do you have difficulty hearing what is said in a conversation with one other person in a noisier room [even when wearing your hearing aid(s)]? 2010/11 NHIS Questions:

11. Do you have difficulty hearing, even when using a hearing aid? (NHIS 2011) FrequencyPercent Valid Percent No difficulty 1441686.187.8 Some difficulty 169510.110.3 A lot of difficulty 2791.7 Cannot do 250.10.2 Subtotal 1641598.1100.0 Refused/NA/DK 3221.9 Total 16737100.0

12. Crosstabulation: Difficulty hearing in a noisy room by quiet room (NHIS 2011) Noisy room Quiet room No difficulty Some difficulty A lot of difficultyCannot doTotal No difficulty 119442873178615001 Some difficulty 124719337111191 A lot of difficulty 11110722141 Cannot do 00025 Total 1206936036226416358

13. Difficulty Hearing - Gradient FrequencyPercent Cumulative Percent 1.001206873.8 2.00305218.792.4 3.007194.496.8 4.005193.2100.0 Total16358100.0

14. - See Handout Hearing Gradient by Short Set Question

15. Communication

16. Using your usual language, do you have difficulty communicating, for example, understanding or being understood? (SS) * Do people have difficulty understanding you when you speak? Do you use sign language? * 2010/11* NHIS Questions:

17. Which of the following, if any, are reasons for your difficulty communicating or being understood? Because you sometimes talk too fast, feel shy or have trouble expressing yourself? Because of a physical problem with your mouth or tongue? Because you need to understand other languages or different ways of speaking? Because you have trouble hearing? 2010 NHIS Probe Questions:

18. Using your usual language, do you have difficulty communicating, for example, understanding or being understood? (NHIS 2011) FrequencyPercent Valid Percent No difficulty 1556493.094.9 Some difficulty 7054.24.3 A lot of difficulty 1120.7 Cannot do 280.2 Subtotal 1640998.0100.0 Refused/NA/DK 3282.0 Total 16737100.0

19. Cognition

20. Do you have difficulty remembering or concentrating? (SS) * Do you have difficulty remembering, concentrating, or both? * How often do you have difficulty remembering? (Frequency) * Do you have difficulty remembering a few things, a lot of things, or almost everything? (Intensity) * How much difficulty do you have concentrating for ten minutes? 2010/11* NHIS Questions:

21. Which of the following, if any, describe your difficulty remembering? I forget things because I am busy and have too much to remember. My difficulty is getting worse. My difficulty has put me or my family in danger. I forget only little or inconsequential things. I must write down important things, such as my address or when to take medicine, so that I do not forget. My family members or friends are worried about my difficulty remembering. My difficulty is normal for someone my age. 2010 NHIS Probe Questions:

22. Do you have difficulty remembering or concentrating? (NHIS 2010) FrequencyPercent Valid Percent Not at all 515219.076.0 A little 9153.413.5 A lot 101.41.5 Completely 3.0 Refused/NA /DK 6042.28.9 Total 677524.9100.0 Missing 2038275.1 Total 27157100.0

23. Difficulty remembering: Intensity by Frequency (NHIS 2010) (see Handout) Count Row % Column % Total % How much you have difficulty remembering (Intensity) How often have difficulty remembering (Frequency) a few things a lot of things almost everything Refused/ NA/DK Total sometimes6203483665 93.25.11.2 100.0 86.427.914.5 70.9 66.13.6.9 often8966120167 53.339.57.2 100.0 12.454.121.8 17.8 9.57.01.3 all of the time92235066 13.633.353.0 100.0 1.318.063.6 7.0 1.02.33.7 Refused/NA/DK0004032 Total7181225543938 76.513.05.93.4100.0 76.513.05.93.4

24. Remembering gradient by Probes (NHIS 2010) -See handout

25. Remembering gradient by Short set question (NHIS 2010) (see Handout) Count Row % Column % Total % Remembering gradient Difficulty remembering or concentrating.001.002.003.00Total Not at all 5152000 100.00.0 100.0 0.0 85.2 0.0 85.2 A little 061010682798 0.076.413.310.3100.0 0.098.486.253.913.2 0.010.11.81.413.2 A lot 010176794 0.010.618.171.3100.0 0.01.613.844.11.6 0.0.2.31.11.6 Completely 00033 0.0 100.0 0.0 2.0.0 0.0.0 Total 51526201231526047 85.210.32.02.5100.0 85.210.32.02.5100.0

26. Pain

27. Do you have frequent pain? In the past 3 months, how often did you have pain? * Thinking about the last time you had pain, how long did the pain last? * Thinking about the last time you had pain, how much pain did you have? * 2010/11* NHIS Questions:

28. Which of the following, if any, describe your pain? It is constantly present. Sometimes I’m in a lot of pain and sometimes it’s not so bad. Sometimes it’s unbearable and excruciating. When I get my mind on other things, I am not aware of the pain. Medication can take my pain away completely. My pain is because of work. My pain is because of exercise. 2010 NHIS Probe Questions:

29. Pain Intensity by Frequency of pain in past 3 months Frequency of pain in past 3 months Pain Intensity Never Some days Most daysEvery dayR/DK/NATotal not asked2631000 6053236 a little01442133112 41691 closer to a little 01994036 0275 in the middle 0303118143 0564 closer to a lot 01095596 0260 a lot0220139314 0673 R/DK/NA016184166 Total263122894867096506775

30. Pain - Gradient FrequencyPercent Valid Percent Cumulative Percent 1.00427215.770.1 2.006242.310.280.4 3.005902.29.790.1 4.006042.29.9100.0 Total609022.4100.0 Missing2106777.6 Total27157100.0

31. - See Handout Pain Gradient by Probe Questions

32. Fatigue

33. In the past 3 months, how often did you feel very tired or exhausted? Thinking about the last time you felt very tired or exhausted, how long did it last? Thinking about the last time you felt this way, how would you describe the level of tiredness? 2010/11 NHIS Questions:

34. Is your tiredness the result of any of the following? Too much work or exercise? Not getting enough sleep? A physical or health-related problem? Something else? 2010 NHIS Probe Questions:

35. How long it lasted by How often felt very tired by Level of tiredness (Handout) How often felt very tired Level of tiredness How long it lasted NeverSome daysMost daysEvery dayrefusedTotal not asked 2377 a littleSome of the day14486730 1545 Most of the day109215 135 All of the day 1653 24 closer to a little Some of the day252204 276 Most of the day3382 43 All of the day921 12 Don't know 100 1 exactly in the middle Some of the day32143111376 Most of the day9835100143 All of the day 37119057 closer to a lot Some of the day98174 119 Most of the day49297 85 All of the day 1666 28 a lotSome of the day24749290325 Most of the day160115431319 All of the day9239560187 Don't know 21014 R/DK/NA 35104547 Total 23773023478224576159

36. Fatigue - Gradient FrequencyPercent Valid Percent Cumulative Percent 1.00407715.067.3 2.006572.410.878.1 3.009193.415.293.3 4.004031.56.7100.0 Total605622.3100.0 Missing2110177.7 Total27157100.0

37. Fatigue – Gradient by Probes N Fatigue gradientTotal PROBES Column %0.00 1.002.003.004.00 Too much work or exercise (13)8443274271141725 49.6%49.8%46.5%28.3% Not getting enough sleep (15)8453665862162028 49.7%55.7%63.8%53.6% A physical or health- related problem (11)3442323722701229 20.2%35.3%40.5%67.0% Tiredness result of stress (3)602948 188 1.5%4.4%5.2%11.9% Tiredness because of other(0)20711240.5%1.1%1.2%.5%

38. Anxiety

39. Frequency: How often do you feel worried, nervous or anxious? Do you take medication for these feelings? Intensity: Thinking about the last time you felt worried, nervous or anxious, how would you describe the level of these feelings? 2010/11 NHIS Questions:

40. Which of the following statements, if any, describe your feelings of being worried, nervous, or anxious? My feelings are caused by the type and amount of work I do. Sometimes the feelings can be so intense that my chest hurts and I have trouble breathing. These are positive feelings that help me to accomplish goals and be productive. * The feelings sometimes interfere with my life, and I wish that I did not have them. * 2010/11* NHIS Probe Questions:

41. Which of the following statements, if any, describe your feelings of being worried, nervous, or anxious? If I had more money or a better job, I would not have these feelings. Everybody has these feelings. They are part of life and are normal. I have been told by a medical professional that I have anxiety. 2010/11* NHIS Probe Questions:

42. Challenges to combining the questions into a definition of anxiety The frequency variable: it was related to other variables in a dose-response so how should we choose a cut-point? Medication variable: what did taking medication for anxiety mean? Should everyone reporting medication use be considered anxious? The intensity variable: should people who felt “a little” anxious be included in the anxious category?

43. Frequency variable Use daily and weekly because if monthly is included the prevalence becomes unrealistically high. Prevalence for daily and weekly = 20.3%

44. Intensity variable Take out people who said they feel “a little” anxious Prevalence for daily/weekly excluding a little = 11.8%

45. Medication variable Medication is an accommodation. (Prevalence of taking medication is 9.2%) Add everyone who takes medication to the people who have anxiety daily or weekly, excluding “a little.” Prevalence = 16.6%

46. Characteristics of persons with anxiety by various definitions N Daily or weekly 1237 4886 Daily or weekly, excluding a little 712 5409 Daily or weekly, excluding a little, plus medication users 1002 5119 YesNoYesNoYesNo K6 score 0 1-2 3-5 6-12 13+ (SPD) 8.3 14.3 27.7 35.5 14.2 52.3 24.5 15.8 6.9 0.5 5.7 9.8 24.2 39.1 21.1 48.4 24.1 17.5 9.1 0.9 9.2 13.6 25.8 35.2 16.2 50.2 24.2 16.8 8.2 0.7 Difficulty remembering or concentrating 36.911.042.912.740.511.5 Frequent pain43.618.149.619.748.118.3

47. Characteristics of persons with anxiety by various definitions N Daily or weekly 1237 4886 Daily or weekly, excluding a little 712 5409 Daily or weekly, excluding a little, plus medication users 1002 5119 YesNoYesNoYesNo Difficulty relaxing at home 5.70.67.50.96.10.8 Difficulty participating in social activities 13.62.818.33.216.12.9 Bed days past yr 0 1-7 8-14 15+ 50.9 32.8 4.6 11.6 67.7 27.1 2.0 3.1 46.4 33.6 4.8 15.2 66.7 27.6 2.3 3.5 46.5 35.0 4.7 13.8 67.8 26.9 2.2 3.1

48. Probe questions Asked only of persons who reported daily, weekly or monthly anxiety or who reported taking medication for anxiety

49. Probe questions N Daily or weekly 1237 4886 Daily or weekly, excluding a little 712 5409 Daily or weekly, excluding a little, plus medication users 1002 5119 YesNoYesNoYesNo Sometimes feelings so intense my chest hurts and have trouble breathing 18.56.325.47.321.16.4 Feelings interfere with life 59.228.172.033.465.428.7 Told by medical professional that I have anxiety 34.921.545.620.849.09.8 Positive feelings – help me accomplish goals & be productive 37.546.432.745.436.045.8

50. Depression

51. Frequency: How often do you feel depressed? Do you take medication for depression? Intensity: Thinking about the last time you felt depressed, how depressed did you feel? 2010/11 NHIS Questions:

52. Which of the following statements, if any, describe your feelings of being depressed? My feelings are caused by the death of a loved one. Sometimes the feelings can be so intense that I cannot get out of bed. The feelings sometimes interfere with my life, and I wish that I did not have them. * 2010/11* NHIS Probe Questions:

53. Which of the following statements, if any, describe your feelings of being depressed? If I had more money or a better job, I would not have these feelings. Everybody has these feelings. They are part of life and are normal. I have been told by a medical professional that I have depression. 2010/11* NHIS Probe Questions:

54. Challenges to combining the questions into a definition of depression The frequency variable: it was related to other variables in a dose-response so how should we choose a cut-point? Medication variable: what did taking medication for depression mean? Should everyone reporting medication use be considered depressed? The intensity variable: should people who felt “a little” depressed be included in the depressed category?

55. Frequency variable Use daily and weekly because if monthly is included the prevalence becomes unrealistically high. Prevalence for daily and weekly = 9.2%

56. Intensity variable Take out people who said they feel “a little” depressed Prevalence for daily/weekly excluding a little = 6.4%

57. Medication variable Medication is an accommodation. (Prevalence of taking medication is 8.5%) Add everyone who takes medication to the people who have depression daily or weekly, excluding “a little.” Prevalence = 11.6%

58. Characteristics of persons with depression by various definitions N Daily or weekly 607 5497 Daily or weekly, excluding a little 401 5710 Daily or weekly, excluding a little, plus medication users 732 5382 YesNoYesNoYesNo K6 score 0 1-2 3-5 6-12 13+ (SPD) 5.1 6.2 18.6 43.0 27.1 47.4 24.1 18.3 9.5 0.8 3.2 4.5 17.6 43.5 31.2 46.2 23.6 18.3 10.5 1.3 9.1 13.3 23.3 35.5 18.8 48.0 23.6 17.6 9.7 1.2 Difficulty remembering or concentrating 45.813.349.614.044.512.7 Frequent pain56.319.858.920.751.919.4

59. Characteristics of persons with depression by various definitions N Daily or weekly 607 5497 Daily or weekly, excluding a little 401 5710 Daily or weekly, excluding a little, plus medication users 732 5382 YesNoYesNoYesNo Difficulty relaxing at home 10.60.811.61.07.60.9 Difficulty participating in social activities 24.23.128.23.519.93.1 Bed days past yr 0 1-7 8-14 15+ 42.3 32.6 6.8 18.4 66.6 27.8 2.2 3.5 41.7 31.4 7.8 19.0 65.9 28.0 2.2 3.9 41.9 34.9 6.0 17.2 67.3 27.3 2.1 3.3

60. Probe questions Asked only of persons who reported daily, weekly or monthly depression or who reported taking medication for depression

61. Probe questions N Daily or weekly 607 5497 Daily or weekly, excluding a little 401 5710 Daily or weekly, excluding a little, plus medication users 732 5382 YesNoYesNoYesNo Sometimes feelings so intense I can’t get out of bed 30.49.138.49.826.38.5 Feelings interfere with life 73.941.080.545.066.442.5 Told by medical professional that I have depression 60.341.467.041.972.117.4

62. Mobility

63. Do you have any difficulty walking or climbing steps? Do you use any equipment or receive help with walking, climbing steps, or moving around? Do you use any of the following: Cane or walking stick? Walker? Crutches? Wheelchair or scooter? Prosthesis? Someone's assistance? Other type of equipment or help? 2010/11 NHIS Questions:

64. Do you have difficulty walking 100 yards on level ground, that would be about the length of one football field or one city block [without the use of your aid]? Do you have difficulty walking a third of a mile on level ground, that would be about the length of five football fields or five city blocks [without the use of your aid]? Do you have difficulty walking up or down 12 steps [without the use of your aid]? 2010/11 NHIS Questions:

65. Do you have difficulty walking 100 yards on level ground, that would be about the length of one football field or one city block when using your aid(s)? Do you have difficulty walking a third of a mile on level ground, that would be about the length of five football fields or five city blocks, when using your aid(s)? Do you have difficulty walking up or down 12 steps, even when using your aid(s)? 2010/11 NHIS Questions:

66. - See Handout Mobility analyses